I already addressed spiritual stuff, but this next area is a doozy. It combines a combination of three inter-related questions:

1. What do I value most as I approach the end of my life? (Mentally and physically)
2. What would make prolonging my life unacceptable and in what ways?
3. What worries me about my body declining and in what ways?

In my opinion, they are all variations on the same theme. At what point does the life I have become a life I no longer want to continue?

A side quest into my mind

I’m going to go sideways for a minute. There is a TV episode I saw some time ago, a procedural of some sort. Something like Castle, Mentalist, or Bones. I can’t remember and can’t find it. Anyway, they go to a scientist’s house, investigate an apparent murder, and eventually discover that the scientist essentially committed suicide. The man had set up a computer that controlled all of the house’s basic functions, plus some scientific ones, and he gave the house the power to run it on its own if certain conditions were met. The conditions? If the scientist’s mind degraded far enough, and he could no longer solve some basic math problems, the computer would trigger the suicide pact. He set a very firm set of rules whereby if his mind deteriorated to a certain point, he wanted to end things. When he failed the math test, the computer killed him. Call it CAID — computer assistance in dying.

That episode resonates with me really strongly. I have always defined myself through my mind. I was never the athlete, never the handsomest, never the most popular. I couldn’t build things with my hands. But I could reason the sh** out of things. I was lucky to be born with a first-class mind, and if something is theoretical, I can likely understand it. Maybe not be top in the field, but my mind has almost never failed me. It’s been tricked a few times, but not a source of failure for me.

My brain is me, I am my brain. And it is the most terrifying thing in the world to me to think of a time when that brain is no longer there. That the “me” that relies on that brain to define me would no longer be there, because the brain function would be gone. Yet the decline and/or the impact of a decline is almost impossible to quantify easily. Would a 10% decline be enough? 20%? 32.758%, averaged over a repetitively tested 30 day period? The computer in the TV show did it through a failed math test for one day. What if you have an off-day? How often should I apply it to myself? I don’t know.

And equally, what about memory? If I can still reason, but don’t recognize Andrea or Jacob, what’s the point of continuing? If I no longer know the two most important people in my life, I’m also no longer me.

These are really hard topics to reason through. For example, am I saying by extension that if someone is scatter-brained and forgetful in their old age, they should be euthanized? Of course not, I’m not saying that at all. I have no views on other people’s lives, how they define themselves, what they think is important, how they view their end-of-days.

But I know that my sense of self — a combination of cognition and memory — is incredibly important to me. If I’m not me, I don’t want to continue being a bag of mostly water, either.

I just don’t know how to test that status in some quantifiable way. I don’t think it’s fair to ask Andrea, or Jacob, to make that decision for me. “Oh, Paul is a bit dotty today, that’s it, off with his head.” Yes, I know, I’m being glib about my end-of-days. Sue me, my last name is Sadler; that’s what we do.

The simple act of breathing

I also have a really strong phobia. I hate the idea of a ventilator. Like on a scale of 1 to 10, where 1 is okay and 10 is having my flesh slowly removed by red ants while being digested over 1000 years in a Sarlacc pit, a breathing tube down my throat probably hits about an 11 or 12.

I was extremely anxious about COVID. The stories of people who went in the hospital early on, the ups and downs of breathing tubes to keep them alive, etc. I honestly felt that if I got COVID and was hospitalized, I would say goodbye to Jacob and Andrea before I went. There’s a scene in the Matrix where he pulls a breathing tube out of himself, puking up water and stuff, etc…for me, that’s Stephen King territory. Now, I know that it isn’t meant to be permanent, and if it was, well, I’m happy to have the machine turned off. But my fear isn’t so much the tube as being conscious with a tube. If I’m knocked out completely? Go for it. Do whatever. Just don’t ever wake me up with it in.

That is likely the same for all general life-support machines. I don’t want machines keeping me alive if there is a low likelihood of any change. I’m not a wait-and-see guy. I can understand someone wanting to give it 30, 60, or 90 days to be sure, but I need to be out for it.

If I’m conscious with a tube, I think my limit is 72h. I think I could make it three days. My brother used to like to say from his time in the military that anyone could stand on their head in a pile of sh** for six months if they had to, but I think I could only make it 3d with a tube down my throat if I was conscious. After that? I’m pulling a Neo.

The odd part is that it is partly about communication, too. If I had something going on where I couldn’t speak, but I could still communicate, type, sign, write, or something, then that would be a bit different. I still couldn’t do the tube, but if I’m able to communicate, that’s a far cry from being locked inside my body. If I’m locked inside, and I can’t communicate out, even if I can hear, I’m willing to go 30d max. Even then, I don’t know if I would make it without losing my f***ing mind. But that’s about all I can imagine.

Maintaining some dignity

It’s funny, the idea of “losing one’s dignity” and it being somehow terminal. Something weird about it, when you think of “my dignity is going to kill me.” And yet, it absolutely will. I find it partly weird because I have gotten used to other things.

I got fat in my teens, spent my whole life that way, and got used to it. I have goals, but I can live with it. Compression socks and all my leg issues knocked me on my ass. It was not serious in the grand scheme of things, but it pushed me hard. I don’t know that constant/chronic issues like leg sores would let me keep an upbeat morale. On its own, an issue like that wouldn’t equal pulling the plug. But how many issues would have to happen before you decide? Or if it was chronic pain with constant nudging or impediments to enjoying life?

If I’m incontinent and have to wear a diaper, I could likely get used to it. It likely would go hand-in-hand with a significant reduction in mobility, sure, but if I was still lucid and had my mind, I could likely cope. But only in some sort of assisted living situation. I would NOT continue to do so if it meant Andrea or Jacob were the ones burdened with my feces. A week or two in an emergency? Yeah, okay, sh** happens, literally. But longer than that? It has to have a reasonably short end date, or I would need one myself. I would need that dignity and not to feel like I was burdening them, even if they were okay with it. I won’t do it.

My overall mobility is a trickier situation, though. If I lose my driver’s license, it’s annoying, but I’m not stepping in front of a bus. Being in a wheelchair likely would need some sort of assisted living arrangement, again, just to be functional. I think I would need to feel like there was still some element of independence. If I’m in hospice, and the end is nigh, I’d rather it was sooner than later.

Oddly, though, I feel relatively unconcerned about being alone. If Andrea is gone, or Jacob isn’t around much, but I can still function, can still watch TV, still write perhaps, that might be enough. I’d rather NOT be alone, of course, but I also don’t want dozens of people around. Mostly I think I would want Andrea and Jacob, and someone who could support them both.

Where do I want to die

This isn’t much of a surprise, I suppose. I know lots of people who want to die at home. I absolutely do not. I’ll be cranky, I’m sure, but I want to be in a hospital room or hospice or clinic or drifting out to sea on an ice floe. I hate the idea of burdening anyone with my passing at home. So much involved, it has no attraction for me. Which isn’t to say it’s easier for everyone if I’m in a hospital. My parents both died in a hospital, one quick and one slow. Quick was hard, slow was worse. I’d love to be able to dictate the timing, through MAID or something similar. And I accept that Andrea or Jacob or others might not agree with my decision. I could hold on, I could fight something, there might be a change, there might be an aurora on the weekend. There will always be other things that I will miss. That happens when you die. And on some level, I already accept that. I think. I am not ready to depart yet, and I hope I have another 30 years-ish. But I want them to be good years. If they’re not, then I don’t want them.

I wonder if at the end, my choice of “where” will be predecided. There are many things that would lead me to say, “Okay, I’m done”. But that’s not the way Canadian medicine works. There’s MAID, but some of the things I have in mind as dealbreakers would not fit most of their definitions. Does that mean I would have to go to Oregon? Vermont? Europe? An alcohol-fueled ride through a battery of saved-up pills? I hope not. I hope it’s civilized and can be done in Canada. If I even have a choice.

I know I don’t want heroic measures if my life would still be severely limited after “recovery”. That will take some time to spell out for Andrea as my likely substitute decision-maker.

Can I create a mental test?

I think I can, in fact, create a quantifiable scale for myself. Not a test that would work for everyone, but one that would work for me. Obviously, if it was points for each element, and a dealbreaker was 50 points, for example, then a breathing tube would be > 50 all on its own. Other aspects from above would be able to be rated and assigned points too. At some point, that collection of “declination” points would add up to some threshold that would say, “Okay, pull the plug”. Or at least that I’m getting closer to that point. Something a bit arbitrary that someone could point to if they had to convince a doctor or a judge or a lawyer that this was, in fact, reflective of my wishes.

I still have a gap though. One that I can’t wrap my head around. My brother Don suffered from a series of mental health issues in his final years, maybe his whole life even. Depression was a regular dark companion. I have it, too. Some darkness, some anxiety, some introversion perhaps. If I’m in pain, will my judgment be clouded? Would I make a different decision if the chemicals in my brain were not leading me deeper into darkness? Do I need to consider what I would consider tolerable not only if I’m bareknuckling it but also riding a cloud of meds? I don’t know.

ACTION ITEMS:
– Identify the 4-5 areas to be part of my “list of concerns”
– Research quantifiable scales that already exist for those areas
– Create a sample test and rating system and field test it
– Consider the “ratings” from PoV of a) unaffected, b) affected, c) affected but medicated for mood

I feel like I haven’t completely nailed this set of concerns, nor did I expect to, I guess. It’s a start. In future posts, I’ll see where some of these link into legal instruments, too, and I’ll have to revisit them to make them more definitive for Andrea to understand.